Guest contributor: Deborah Tomai of Rio Grande Valley Down Syndrome Association
“Everything’s bigger in Texas” is an unofficial state motto. Texas has 254 counties and over 28 million residents. One out of every ten U.S. children lives and is educated in Texas. It’s the second largest state in both area and population (Alaska and California are first, respectively). I live almost on the southern border of Texas, and it would take me over 11 hours to reach Amarillo, which is near the state’s northern border.
Because Texas is so spread out, our DSA leaders don’t have many opportunities to see each other; oftentimes, we get together at conferences in other states. Last summer at the NDSC Convention in Dallas, Cameron LaHaise formerly of DSA of Central Texas, Jennifer Ford from the Down Syndrome Guild of Dallas, and Deanna Tharpe from DSAIA (and relocated Texan) pulled together a group of leaders from across the state to have a conversation about connecting. Cameron had a passion for making sure that each family with a new baby was receiving information required by the newly passed Down Syndrome Information Act; she asked each group to distribute a survey to new families. Deanna was excited because DSAIA had the foresight to buy domains for each state. Texas would have the site downsyndrometexas.org, modeled on downsyndromeohio.org. The website is not designed as a stand-alone resource, but it points people toward local support.
Since that meeting, we’ve slowly but surely started growing our connections. We’ve had the occasional conference call, and there’s an email chain. What really got us moving is the Texas Legislature. The Texas Legislature is in session only 140 calendar days every other year, so if there are any policy concerns that impact people with Down syndrome, we have to address them now or wait until 2021.
The stars aligned in another way: the new speaker pro-tem of the Texas House of Representatives has a sister with Down syndrome. Rep. Joe Moody has been supportive of the disability community, and his family thought this would be a great year to celebrate World Down Syndrome Day in Austin. With their encouragement, our organizations decided to meet for a celebration at the Texas Capitol.
This Thursday, we will have over 50 people from across the Great State of Texas joining us at the State Capitol to receive World Down Syndrome Day proclamations in the Texas House and Senate. While we’re there, we’ll meet with legislators about current issues in special education, transition, employment, Medicaid waiver wait lists and more. We’re excited to kick off our Down Syndrome Texas collaboration with a visible, impactful day at the Capitol.
We’re still figuring out how our state collaboration will work in the long run, but we can already see that it’s making a difference. In June, DSA leadership will meet in College Station to flesh out the longer term goals of working together - state advocacy, sharing info about events and conferences across the state, and working together to ensure that families in all 254 Texas counties have access to local support. Thank you DSAIA for hosting the website and giving us the push to get together as a state.
We are more powerful together.